Meet Amanda Frank, a young woman in her early twenties.  Amanda is living with Goldenhar Syndrome, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS), Craniocervical Instability which is due to Hypermobility Ehlers-Danlos Syndrome (EDS), MCAS, Gastroparesis, Chronic migraines, myokymia (which is a secondary part of a couple conditions), and so many others.  But she does not let her conditions define her. She is almost completely bedridden now. But she wasn’t always this way. I quote “I Love music and was a music major in college, singing and playing 10 musical instruments by the time I graduated high school.  I love to draw, color, write, make things with clay, and have worked with kids since I was old enough to babysit. I played soccer for 12 years and found a love for volleyball my senior year of high school.” She has a hope that someday she will be able to manage her condition enough to play these sports again, so, to remind herself of that hope the name of her facebook page, was named The Life of a Recovering Athlete.  She first noticed symptoms when she was in 7th grade, passing out after a run on the track team or a long soccer game. This was accompanied by migraine. Migraines have always been a part of Amanda’s life. Migraines turned to seizures.  Symptoms seemed to be getting worse. Now passing out On field during soccer games. “I just felt like the worst soccer player ever- you know the one who loves the sport so much that you have to include to be nice because you feel sorry for them? Yeah I was THAT kid.”  She ended up having to quit the soccer team. That is when the anxiety/panic attacks started for Amanda. Despite all of this, Amanda headed off to college with a scholarship to study vocal music at the Horne School of Music, which partnered with Julliard. After completing only 1 year of college and music study she had to move home as symptoms where getting worse with no answers from doctors. In 2015 she had to move back home. Amanda held to her religion through all of this. No one in the medical field seemed to want to take on all her complicated symptoms and was told “It’s all in your head” or “go to a therapist” At times Amanda started to wonder if they were all in her head.  A good family friend suggested Dysautonomia (the failure of the autonomic nervous system). Her primary care turned this idea down as all tests had come back normal. This was very frustrating for Amanda. Through a blessing and prayers she was able to find a doctor who diagnosed her with POTS. Even through all the pain and disappointment Amanda remains hopeful. Amanda is a fighter and is so grateful for modern medicine. She shares her journey to give hope and awareness to these diseases that so little is known about. She finds joy in the little things and has faith that things will get better. A week ago she got a call from New York. The neurosurgeon there wanted to schedule her for a craniocervical fusion & it is supposed to be a the beginning of March.  Amanda got hit hard, the insurance denied the coverage, saying it’s more of a convenience. “Most don’t understand my situation here the thing is my neck & head are so bad. My seizures?...The surgery will help my swallowing, breathing, and a whole host of other symptoms. Only after that can I schedule my MALS surgery on my abdomen. The surgery is the start of helping everything & to have it denied, broke the hearts of me and my family so much.” Amanda continues, “The Lord has provided for me and my loved ones my whole life and He hasn’t stopped.” Amanda has so much faith and believes a miracle will happen. I believe that we are the answer to the miracle. Please spread the word so that Amanda and her family can afford to take her to get this surgery. My friend has so much to offer this world.  I do not feel that it is her time. She has so many more people to inspire. Please share this story. And if you can please donate to her gofundme page. Follow her on facebook to get more updates and to learn more about this amazing woman.

All money will go straight to Amanda and her family.  Anyone who wants to help spread the word or join this go fund me group message Joanna Holmstead on Facebook.  

Thank you so much for anything you can give to help Amanda and her family.